John Henkels, Author of Samuel's Mission, A Family's Return to Joy talks about he and his family's trials and tribulations as their life suddenly changes when their baby boy Sammy was diagnosed with Hemophagocytic Lymphohistiocytosis.
How has Histiocytosis affected you?
Our son Samuel became ill at 2-1/2 months, recovered and then relapsed at 7 months. He was diagnosed at that time with HLH by the tremendous staff at Cleveland's Rainbow Babies and Children's Hospital. Once diagnosed, Sammy was treated by Dr. Lisa Filipovich at Cincinnati Children's Hospital Medical Center and received his BMT from an unrelated donor in February of 1999. Complications, especially GVHD arose about 30+ days post transplant. Sammy's condition spiraled slowly downward for months. He never left CHMCC. Sammy fought like a lion but just couldn't beat the disease. He passed away on August 14, 1999 at the age of 16 months.
The book tells Sammy's story but also takes the reader inside our marriage as Suzanne and I so divergently cope with catastrophic childhood illness, Sammy's death and the grief that follows. The story is told very candidly and with masculine emotions that are so often hidden and unexpressed. Samuel's life and his mission began to come into focus weeks after his death and was not truly clarified until years later when the lessons of his short but powerful life were finally realized. In our time at CHMCC, Suzanne and I witnessed so much death....and learned so much about living. It was a concept (described in detail in the book) of "Extravagant Love" as expressed and shared by Sammy and the dying children, families and staff of Hem/Onc. that became Samuel's ultimate mission. It was this "extravagant love" that allowed Suzanne and me to rescue our marriage from the edge of a cliff and find our way using specific and intentional values to a life of deep faith and JOY!
Samuel's Mission began as my therapy during Sammy's difficult treatments and was intended to tell the amazing story of how this little child defeated the monster called HLH. The book, of course, turned into a much different story.
How did you come up with the title of this book?
Samuel lived a short but hugely impactful life. His suffering was immense and his spirit large. I realized as he was fighting for life the effect he had on my life and the impact he made on staff, families in the unit and others that heard his story. Sam had a short life, but he accomplished much in that time. Samuel's mission was completed.
How has life changed since writing Samuel's Mission?
Life changed dramatically during the four rewrites as Suzanne and I went through grieving and finding our way to joy. Initially the book ended with Sammy's death. But as his lessons were learned and his mission clarified, his story also changed.
Where do you see this leading you in the future to raise awareness for HLH and Histiocytosis?
The reviews have been beyond my dreams. Tammy Zimmerman gives it 10 out of 10 stars. Another reader wrote. "Buy the Book, it will change your life." There are many others. I do not need to make $ on the book. In fact, I have been distributing it during Histio awareness month for below my cost in order to raise awareness. I hope to eventually have 3000 copies in circulation.
Along with the book, I have engaged in speaking opportunities and look forward to any venue to spread the message about the disease. I speak to grief groups, medical professionals, church groups and at Histio events. Next month, I will be giving my talk on PTMD or Post Traumatic Marital Disorder at a Symposium on Life and Loss in Connecticut.
Where can our readers purchase their own copy of Samuel's Mission?
Readers can order from me for the new low price of $9 during HIstiocytosis Awareness Month including postage by emailing firstname.lastname@example.org
You can also find it online at samuelsmission.com direct from the publisher for $20, Amazon.com, Barnesandnoble.com, or downloadable to any device.